Payton Alexander at the age of 15 went into Children’s Hospital on January 15th, 2018 because she was losing her ability to walk. They confirmed a mass and underwent a 7-hour surgery to remove part of the mass and put in steel rods in her should blades.  On January 25th she was diagnosed with localized Ewing Sarcoma, which is a rare aggressive bone/soft tissue cancer, in which the mass was centered at the T3 vertebral body which extended into the paraspinous soft tissues protruding into the mediastinum and epidural space, compressing the spinal cord. 

Payton had spent 13 days in the hospital had undergone surgery to remove the tumor by her spine, a procedure to put in her Chemo Port, Bone Marrow samples, and make a decision if she wanted to harvest her eggs before she started chemo or after, because the Chemotherapy she was going to receive would but her into early menopause in her late teens to early twenties.

Emotionally and physically her recovery was extremely difficult.  Learning to walk again, in constant pain, nausea from the medicine, wanting to be home with her family and dog.  However, this was just the start to her long journey.

Payton was treated with 14 rounds of chemo and 27 rounds of radiation The chemo was Doxorubicin, Cyclophosphamide, Etoposide, Ifosfamide and Vincristine.

Each treatment Payton received became harder and harder on her system.  She wouldn’t eat when she would be inpatient during treatment because the nausea was to overwhelming. No matter what nausea medication was given, and we tried over 7 of them, it never really went away.  In the first two months Payton not only lost her hair, she lost 20 pounds and began having heart issues.  On her 16th Birthday while she was in patient for an infection, she had to have a feeding tube put in.   

During the 11 months of treatment, Payton spent over 6 months of those 11 months in the hospital. Chemotherapy, radiation, loss of her hair, feeding tube, over 15 infections, getting Typhlitis twice-which is inflammation of the large intestine and extremely painful, over 40 blood transfusions, over 30 platelet transfusions and being airlifted from Waupaca when we thought we could try to take a weekend camping trip for some normalcy.  

However, out of all the hardship Payton was enduring we were surrounded by our amazing family and community that reached out to our family to get through this. Payton never wanted her cancer to define her.  She wanted to be treated like normal, not like she had cancer and although our community was always wanting to help us, Payton wanted to help others.  Payton reached out to other teens that were going through the same battle.  Talking to them helping them get through the emotional trauma that no other teen understands.  Payton was also trying to help others by listening or doing something.  

We were so happy that Payton had been in remission for 13 months. In February 2020 she started to experience lower back pain that started traveling down into her hip and leg.

I asked for her scans that were scheduled on March 5th 2020 to be pulled up because of her lower back pain.  Unfortunately, the scans they did were not low enough and did not catch the tumor.  Unfortunately, abnormalities were seen in her January 2020 liver scan for iron overload and it was missed.

Pain continued and started to radiate to her hips and numbness in her upper thigh.  I asked that something else be done. We went in March 6th they indicated they went back to her January Liver scan and saw the abnormality and scheduled a MRI that afternoon.  That mass was confirmed in the MRI stating Interval increase in the size of large lobulated T2 hyperintense, avidly enhancing mass.

Bone Marrow aspirations and biopsy was done on Tuesday, March 10th and Pet Scan and Chest Scan were done on March 12th, 2020.  The doctor confirmed that her Ewing’s came back and there was a large tumor, in her bone barrow, spots through her body, and small spots on her lungs.

This was devastating news as we knew relapse Ewing’s Sarcoma has a 20 to 30% survival rate. Her port was placed on March 13th and we started chemotherapy on March, 16th, 2020 because I felt that we couldn’t wait any longer and no other trials were being offered because of the corona virus.

In 2020, Payton did 6 rounds of Chemotherapy of Irinotecan and Temozolomide, harvesting of stem cells, then Autologous Stem Cell transplant in October of 2020 (Melphalan/Etoposide High Dose Chemo Administered).    Payton was in the hospital all of October 2020, coming home on November 4th 2020.  It was a long hard month with nausea and extreme mucositis, which is extremely painful and prevented her from wanting to eat anything. In November, right after the stem cell transplant, she received 28 rounds of radiation.

In February 2021 a PET scan showed all clear, however an area near her jawbone was suspicious.  We were asked that she see a dentist as they thought it could be a cavity.

Dentist did not see a cavity but recommended removal of wisdom tooth in the future and was also seeing some inflammation.

Shortly after the dentist visit, Payton started experiencing numbness in a portion of her chin and lip along with pain in the jaw area.  Additional Head CT scans, 3D Cone Beam of jaw and MRI done of head.  Nothing showing evidence of cancer.

Removal of wisdom tooth was done on March 25th along with a biopsy.  Chest CT Scan done on April 1st with no evidence of Ewing’s.  Biopsy results came back April 7th, one day before her 19th birthday telling us she has active Ewing Cells.  Payton relapsed again.   

The conversations with doctors were so frustrating and hard at this point.  We will not give up! She received 5 days of radiation on her jaw and then began a regimen of 5 days of IV chemotherapy.  The IV chemo was so extremely hard on her system and after several rounds we discovered it wasn’t working. 

This was another hard conversation with the doctors.  What clinical trials does she qualify for, what options does she have, if this was your child what would you do?  It came down to doing a maintenance drug and pray that she will qualify for clinical trial that will open.   

The maintenance drug was extremely hard on her as she had no energy, no appetite, shortness of breath easily, mouth sores and sleeping sometimes more than 14 hours a day.

We prayed that some of the side effects would improve, but on October 18th 2021 she went to the ER at Children’s Hospital and discovered she had pneumothorax on her left side.  A chest tube was put in and as days progressed another one had to be put in her right.  Payton fought hard and wanted so much to go home but on November 4th, 2021 she passed away surrounded by Steve, Austin, Paige and I.  She is forever in Gods arms!

To see Payton’s whole Journey: https://www.facebook.com/groups/146042299419084/